In Defence of Dementia Friends

Until Mum’s diagnosis, I didn’t spend much time reading about health matters. Before my father succumbed to Non-Hodgkins Lymphoma in 2009, which was followed obscenely quickly by confirmation that Mum had Alzheimer’s, my family had largely been blessed with robust health.

Since that comfortable existence was shattered beyond repair, I’ve taken more than a passing interest in health policy. I was brought up to value the National Health Service and I still believe its creation was one of Britain’s outstanding achievements of the 20th century. Now, though, I like to think I have a more discerning eye and one of the writers who’s helped to inform me is Roy Lilley. As such, I’m a great admirer of his work. But…..

Yesterday, I read his thoughts on the Dementia Friends initiative – you can read them here: http://bit.ly/1iQvHCL.

As you know, I’m proud to be a Dementia Friends Champion and passionately believe that raising awareness is a key tool to helping people living with this dreadful disease. Roy Lilley says he wouldn’t wear a Dementia Friends badge because he is suspicious it is  “misdirection, camouflage and a cheap way out of an expensive problem.” Furthermore, he doesn’t see “how this helps anyone with dementia”. Well, perhaps not directly no but five years ago, my family was one of those he talks about being in “a cul-de-sac not knowing where or how to turn”. As I’ve said before in this blog, the NHS invited me to ask any question I liked on behalf of Mum. The problem was that I hadn’t a clue what to ask – this was frighteningly new territory for us. It was the Alzheimer’s Society and other charities which helped to point me in the right direction. For that, I was and remain truly grateful. They helped to raise my awareness which was the first, crucial step along the road of real support for Mum. 

Roy Lilley says: “There cannot be anyone who is not aware of the crippling effects of dementia.” Honestly? That isn’t my experience. I still talk to people – friends and colleagues – who have no idea what dementia means, what it really means. How it can dismantle your world, how it can rob you of so much, and I don’t just mean financially. They can’t appreciate what it’s like to take a phone call in the middle of the night from your mother saying: 

“Help. I don’t know what’s happening to me.”

How those words sliced through me then and still do.

Sometimes, I receive messages from people I’ve never met, commenting on how blogs like this, and there are so many these days, have helped them to understand a little more about the impact of dementia. So, no, I don’t believe that there cannot be anyone who isn’t aware.

Please don’t think this is a personal attack on Mr Lilley. Quite the contrary. He is absolutely right to say we need action and not just awareness. He questions the genuine commitment of our government to get to the heart of the issue. Bang on. Soundbites are cheap, action is expensive and I think I know which option some in power prefer. Like many, I’m sick and tired of rhetoric. How, in the 21st century, can dementia still be viewed as a social care issue and not a medical one when it comes to funding? I once asked a former Secretary of State for Health, Andrew Lansley, that very question. He didn’t answer it. Make that couldn’t answer it. By the way, check out Roy Lilley’s appraisal of Mr Lansley’s time in office. It’s worth a read.

After Mum’s diagnosis, I would take her shopping to the supermarket once a week. To start with, she’d make her own way round the store and we’d meet up at the checkout but quickly, it became clear that I needed to shop with her. Still, it was important that she packed and paid. I was paranoid about doing anything which might undermine her faltering, fragile confidence. One day, she produced a National Trust membership card to pay. I stepped in and handed her a debit card. She had no idea about her pin number. The queue behind us was getting longer and the tutting was getting louder. I wanted to address the queue and explain the pain both Mum and I were experiencing at that moment. I didn’t. For me, though, being a Dementia Friends Champion, hopefully raising awareness, puts me back at he head of that queue. It’s a step in the right direction. A small step maybe, but a step nevertheless.

That’s why I believe in Dementia Friends. It isn’t the answer, of course it isn’t, but while we wait for those in power to make radical decisions about how dementia is viewed (and I’m not holding my breath), it’s the least we can do. 

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2 Responses to In Defence of Dementia Friends

  1. Carrie says:

    I absolutely agree that there is a lack of awareness including amongst those who should know (carers in care homes) as well as those of us who have been launched into having to work out how to support and help and ultimately act on behalf of someone living with dementia. I have seen it time and time again as my mother lives with vascular dementia now in what is known as ‘later stages’. Assumptions, misunderstandings and lack of knowledge abound. I understand the concerns about Dementia Friends. My main one is the emphasis on memory loss. My mother’s memory was by no means the first sign, in fact that’s a much more recent change, but because of the emphasis on memory she wasn’t diagnosed until she was in the later stages. She and we were unable to make informed decisions as a consequence. But I agree any initiative that helps is a step in the right direction.

    • Thanks for taking the trouble to reply Carrie. You’re right – Dementia Friends isn’t perfect and like any initiative, it’s rather broad brush. But it’s something.
      I’m so sorry to hear about your experience. Being able to make informed decisions based on a full diagnosis is the very least we should expect.
      Thanks again.
      Duncan

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